I was diagnosed with Linitis Plastica and I'm cancer free now

amen to that

Hi Aurthor

That's a great result for you! Did you have any metastises when they found it? What stage were you? My Mum was diagnosed with LP in July but it had already spread to the peritoneum so she is unable to have surgery. She is currently on round 5 of chemotherapy. She's doing amazingly well apart from the nasty side effects of chemo so we are very hopeful that she can defy the odds and beat this cancer too. 

Hi Bsmca.

Just thought I would welcome you. Hopefully you will find infirmation  specifically for the cancer type.

It is always good to have personal experiences as there are many variables leading to diagnosis made at different stages and numerous reasons why a particular treatment regime is offered.

Good luck, glad your mum is coping well, take care

Are you in the UK? I am struggling to get anyone to consider an operation to remove my stomach as I have two secondaries one on top of my gallblatter and the other on top of the fatty tissue on my colon. It seems in the UK this is standard. 

This is excellent news and gives us all hope. Are you in the UK? I have Linitis Plastica with two secondaries I am hopeful that the chemo will take them out. It appears if you have secondaries in the UK the medics will not consider surgery. I have just start round 3 of EOX  Chemotherapy and can already feel an improvement on my ability to eat normally. I have a scan next week and a clinic appointment the following week. I am frustrated that no consideration of any operation 

Hi Ewatt

Sorry you feel frustrated but glad you feel you are doing better.

I am sure you have discussed with your medical team their reasoning behind the treatment regime they have offered 

Gastrectomy  is major surgery in itself and then there is the recovery and getting to grips with eating post surgery.

Typically, after leaving hospital gastrectomy patients have a period of doing less well than they were in hospital. I think is because we have used up our inner resources and can't for a while eat enough of a broad enough range of foods to replace them. The operation itself can be quite an assault...mine took 5 hours.

I appreciate that you may have considered all these factors that I mention and still think you would like to have this option.

My sub total gastrectomy was for a GIST... a gastrointestinal stromal tumour.

Hope you continue to feel the benefits of chemo without too many side effects, take care.

Hello ewatt1951.  First, I hope you are still doing well and still getting improvement on your ability to eat.  My husband has gastric linitis plastic - diagnosed in Sept 2016.  I did a lot of reading once he received this diagnosis trying to figure out how it works and what is the best treatment.  I have read many research articles and a few of them have shown that if the LP has metastasized (secondaries in the UK) results vary little between those folks who have the TG and those who don't. So likely they don't want to put you through the TG surgery and long recovery if there is little benefit. This was also what my husband's surgeon had told us.  I think it is very good that you are able to eat more normally since the chemo.  This happened with my husband as well - he even put some weight back on during the chemo!  I hope you had good results from your scan.

Best,

Lori

 I was diagnosed with LP back in 2016. I had my stomached removed in October of 2017. I had stage 2 with no spread or no lymph nodes involved. I was doing great until December 15 of 2018 when I had to have emergency surgery for a twisted intestine. The surgeon who did the TG did not do something right in over a years time the mistake he made while removing my stomach showed itself. This was very painful. It started out as a dull ache in my gut . But after a few hours increased big time. I'm cancer free by the grace of God and now I need to concentrate on getting some wright back on. I recently was in the hospital and passed a 8 mil kidney stone so that knocked me down some but I'm doing well now and my appetite is doing better. Hopefully in a week or two I will be back to restoring my vintage trucks. I'm located in the U.S. Alabama. just stay the course and kick demon cancers butt. And like my friend Tony always tells me no one fights cancer alone. I will pray for you. [edited by admin]

Hi

I am in the UK, I have just been diagnosed with stage 4 linitus plastica.  Which has spread to the small intestine and is inoperable.  I have yet to see the oncologist so I don’t know what the treatment will be.

I don’t have any pain apart from a little cramping after eating (I can’t eat much) and discomfort when having a bowel motion.  I am however losing weight very quickly and have no appetite at all.  I know this cancer has a very bad prognosis but I have spoken to people who have lived for a few years with stage 4 and that gives me hope given that cancer treatments are improving by the day.

its hard to stay positive and some days I want to give in  (and I haven’t started chemo yet).  but I think our mood affects our body chemistry so I’m going to try and get out in the fresh air everyday and continue to do normal things. 

I am going to try cannabis oil as I have done lots of research and although there is no absolute proof to suggest it works with cancer there is a lot of anecdotal evidence that it does.  At this stage it can’t hurt can it. 

Keep in touch

Denise

Hi Denise, I'm sorry you have been diagnosed with this. My Mum had LP and surpassed life expectancy by a good margin with great quality of life with this disease so whilst prognosis isn't good, don't take the actual prognosis as read. They're really helpful. Cannabis oil really helped my mum. Depending on where you live, some countries will still treat you as non terminal so with fund raising lots of people travel for surgery elsewhere. That's a personal choice of course, my mum chose not to. Wishing you lots of luck Denise x